Saturday, March 29, 2014

Disabled People Are Confusing

It seems like a lot of disability blogs and websites have gotten into the same listing trend that made BuzzFeed famous. If I’m going enter the list game, and it seems like I must, I want to do something different.

I started off by listing one or two-sentence concepts about disability that I think are important to understanding disabled people. One fact seemed to run through all of them. Disabled people are confusing!

Please, don’t get the wrong idea. We’re not inexplicable. It’s not that we don’t make any sense. By and large we aren’t dishonest or inconsistent. From the point of view of non-disabled people, though, (as best I can tell), a lot of the thoughts, feelings, and ideas we disabled people take for granted can appear strange and contradictory to others, including some of our clan who have only recently become disabled.

So, here is my list ...

10 Ways Disabled People Are Confusing

1. Disability isn’t always easy to spot or identify. Some people who have very visible, obvious disabilities may be less impaired than they appear to be, while a lot of people have very significant disabilities that you can’t see at all.

2. Everything is fine, disability is no big deal! Except when it’s terrible. Life with a disability is probably not as bad as you might think, but it’s also probably harder, more tiring, more painful than we tend to let on.

3. Depending on the situation, sometimes we have to persuade people of how capable we are, while other times we have to argue that we are, in fact, disabled. Disbelief is a common reaction to our disabilities, and it can work both ways.

4. We like being praised. Who doesn’t like praise? But we are also suspicious of it. We have heard so much of it that is fake and unearned that we have a hard time accepting it when it is real and deserved.

5. We are proud of fellow disabled people who become famous comedians, actors, athletes, or politicians, but we worry about non-disabled people learning the wrong lessons from their examples. You know, yay for the Paralympians and all, but don’t hold your breath waiting for me to play Sled Hockey, okay?

6. Physically disabled people don’t like being treated as if we are also intellectually disabled, but it’s weird because we know people who actually are intellectually disabled deserve respect, too. It’s like old “Seinfeld” episode: “I’m not gay … Not that there’s anything wrong with that!"

7. Most of us are pretty self-reliant, but at the same time it's upsetting when nobody steps up to help us out when we need it. Here’s a tip … It’s always nice to be offered help; it only becomes annoying when it’s forced on us by people who seem convinced we are helpless.

8. We struggle all the time to figure out the right balance, in the right situation, between being a cheerful doormat and an annoying advocate. All the social rewards go to people who are pleasant no matter what happens. The harder stuff, the stuff we need that makes a real difference, often requires us to be tough and confrontational ... a.k.a., a pain in the ass.

9. Good luck getting us to agree on what we should be called. Some of us like “person with a disability”, others prefer “disabled person”. A few of us still have trouble with any variation on the word “disabled”, but the problem is that all the alternatives words are worse … smarmy (“differently abled”), patronizing (“handicap-able”), or so nonspecific as to be functionally useless (“special needs”). That’s one reason why some of just say “screw it” and opt for “cripple”.

10. We can hold two, three, even four or five vastly different concepts of disability in our minds, simultaneously. Is disability a dread disease, a social identity, a character-building challenge, an embarrassing scar, or an invisibility cloak? Is it part of who we are, or is it something that gets in the way of people seeing who we really are? Is it a natural variation, or an abnormality to be avoided? We’ll have to get back to you on all that ...

Disabled people are confusing sometimes, but that's partly because it is confusing to be disabled. Plus, even if we can't give non-disabled people absolute rules and truths about disability, there is value in knowing what we are conflicted about. Our internal and external conflicts and contradictions say a lot about who we are, and about disability as it is actually lived.